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Crohn's Disease Forum » Ulcerative Colitis Forum » Ulcerative Colitis and Colon removal


11-04-2012, 09:53 AM   #1
Phinkle
 
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Ulcerative Colitis and Colon removal

Hi all,
Like many of you on this forum, I was diagnosed with UC in 2008 after a colonoscopy at the age of 29. Knowing what I know now, I was being affected by it for 4-5 years prior. After my fist colonoscopy it was pretty routine, inflammation, no polyps, just strictly UC. I was put on prednisone to put me in remission, weaned off that and was told to take 4 pills (4.8mg)of Lialda every morning. I was never in any pain with UC, just would have to use the bathroom frequently. As long as I took the Lialda daily, I was doing great. No flare-ups, no pain, bathroom breaks were cut in half. It was completelymanageable. I could now go out to dinner, have lunch with clients, continue to have what I felt was a normal schedule and lifestyle. I was told to have routine colonoscopy every 5 years..

I went in for my next routine appointment and to schedule my next colonoscopy, I had the colonoscopy done on 10/19/12 and they found my colon was riddled with benign polyps. Some of the polyps were large and in difficult areas to remove during a colonoscopy. My doctor recommends surgery to have them removed because of my age, how long I have had UC and the size of the polyps. He sent me to a specialist in Chapel Hill for a second opinion who also agreed that I should either remove the whole colon or we could just remove the right side of the colon.

Both options are to avoid the polys turning into cancer, I am having a difficult time making a decision on what path to take. I have read many posts on people that have had the whole colon removed and are struggling with the amount of time spent in the bathroom and leading a "normal" life. I am living a normal life with UC now but I certainly do not want cancer.

Are my options to aggressive? What do the doctors consider a normal lifestyle? They say I would use the bathroom 4-6 x's a day, is this true? From what I read 4-6x's is a lowball number......
11-04-2012, 03:13 PM   #2
2thFairy
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When you mention using the bathroom 4 to 6 times a day after surgery, do you mean due to total colectomy with J-pouch or just more trips due to a shortened colon?

I can only tell you about life with ileostomy after having the whole colon removed. There are a few members here who have had or currently have a J-pouch and they can tell you more about that. I have a J-pouch formed, but have elected to keep the ileostomy because I am soooo loving life without the problems of UC pain and being glued to the toilet.

I agree that removal of the diseased area with polyps is an excellent plan. If you only have the right side of the colon removed, your UC will most likely return and with that the polyps will probably return. I don't think your options are overly aggressive, but are right on target. The choice is a difficult one, definitely.

You might repost your question in the main discussion section to get more exposure from people who have had partial colectomy (there are quite a few) and see how their experiences have been after surgery.
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11-04-2012, 03:13 PM   #3
2thFairy
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P.S. Welcome to board!
11-04-2012, 05:08 PM   #4
Phinkle
 
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Thank you for the welcome...

When you mention using the bathroom 4 to 6 times a day after surgery, do you mean due to total colectomy with J-pouch or just more trips due to a shortened colon?

With the surgery and a j-pouch the Dr say 4-6 times a day, I am not currently doing it that many times, I have in the past And don't want to go back.

What you stated about only having the affected portion removed, and the UC staying, polyps coming back, surveillance colonoscopy's every 1-2 years, I think i would just rather get it done with now then have to deal with again and another surgery.but then again do I take my chances and keep an eye on it.

With the j - pouch do you get the need to go immediately? Are you able to keep a bathroom schedule? No food has been worse then others for me, I usually can eat whatever type of food, does that change with pouch?
11-04-2012, 05:48 PM   #5
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Hobbes650, ChristineinDenver and SallyJPouch/Crohns all have had or still have functioning J-pouches and can tell you their experiences. I have tagged them, so hopefully they will be able to respond to some of your questions.

I have been told by many people that the first 6 months or so after J-pouch surgery you may be having up to 20 trips to the bathroom a day, including at night, but that is supposed to lessen over time and ultimately end up around 4 to 6 times a day. My surgeon seems to think 6 months maximum, but my GI said it can often take a year.

Hopefully someone else will come by soon and be able to help with your other questions.

There is another support board that is focused only on J-pouch type issues called The J-Pouch group. Here is the link for that: http://j-pouch.org/eve
I don't visit that forum very often, but it might also be of some help to you.
11-04-2012, 06:16 PM   #6
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I am also tagging ameslouise to see if she can help with some of your questions.
11-04-2012, 06:42 PM   #7
Phinkle
 
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Thank you very much for your input 2thFairy
11-05-2012, 11:03 AM   #8
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Hi Phinkle. I am happy to share with you my experiences. I had UC for years, was on Remicade and then prednisone, Azithioprine, you name it. Got out of remission in January 2011 and never got back into it. In Feb 2012 my docs told me I couldnt wait any longer, my colon was shutting down. I had it removed on May 1, they built a J Pouch and I had a temporary ileostomy for 6 weeks. The take down surgery was uneventful, and I looked forward to getting back to my life. I have a good friend that had this same surgery, and she is doing so well (2 years out). She goes about 6-7 times a day, no accidents, best thing she ever did.

Unfortunately I am not having that same experience! Part of it I chalk up to the fact that I was much sicker and depleted prior to surgery than she was. But I am going to give this to you honestly. I am still going 20+ times a day. I have had an endoscopy and structurally all is healed and looks good, so now the question is whats going on with my small intestine and do I have a food allergy and/or absorption issue. I am on so much medicine that I should be completely stopped up like concrete ~ its just not happening. I am off to see a specialized gastroenterologist this morning and I anticipate more blood tests and dietary changes.

In terms of would I do it again, well, after I awoke from the first surgery the doctor shared that my colon indeed was shot. He said I had maybe another two weeks and then it would have been emergency surgery, stomach opened and organs being washed because it would have burst. So I think the fact that we are able to schedule this surgery gives us the false sense that it was a bit more elective. Its not. Its going to save/extend your life.

In terms of the polyps driving your decision, if it were me I would just get it all out. It sounds like that will be your doctor's suggestion at some point, if not right now, and it seems to me that it would be a whole lot worse to be dealing with cancer and colon removal. But that's just me.

If you're not having huge bathroom issues now dont you think your chances of continuing that trend are pretty good? I did have huge issues before the surgery, so I really believe that there has always been some other component the docs havent been able to get a handle on.

Whatever you do, find the best best best surgeon available to you. This is a super specialized procedure and you want someone who does this all the time, like at least once a week or more. My procedure took six hours. They are removing a huge organ and rebuilding your plumbing and you want someone who has done so many of these that they have seen everything possible along the way.

Good luck!!!

Christine
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11-05-2012, 01:36 PM   #9
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Hi, I have Crohn's Colitis (not UC) but ended up having my entire colon removed. I had an ileostomy for 6 months then had that reversed. I do not have a J-pouch. I currently do go to the bathroom about 4 to 6 times a day. Two of those being at night. Like clockwork - 3:00 then again around 5:30. Other than that I am doing great. Getting back into shape and not worried about the Crohn's. I had an incredible surgeon who removed my entire colon through a 1-inch incision (most will do 14 inches up your abdomen and through your stomach muscles). If you have not had any stomach surgeries before you should be able to avoid that surgery. I can recommend my surgeon if you like. She is at the Cleveland Clinic. But, if you do elect to have this surgery, like Christine said, you want the best you can find. Good luck!
11-05-2012, 02:39 PM   #10
Hobbes650
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Thank you for the welcome...

When you mention using the bathroom 4 to 6 times a day after surgery, do you mean due to total colectomy with J-pouch or just more trips due to a shortened colon?

With the surgery and a j-pouch the Dr say 4-6 times a day, I am not currently doing it that many times, I have in the past And don't want to go back.

What you stated about only having the affected portion removed, and the UC staying, polyps coming back, surveillance colonoscopy's every 1-2 years, I think i would just rather get it done with now then have to deal with again and another surgery.but then again do I take my chances and keep an eye on it.

With the j - pouch do you get the need to go immediately? Are you able to keep a bathroom schedule? No food has been worse then others for me, I usually can eat whatever type of food, does that change with pouch?

Hi Phinkle,

Having an internal pouch (like a j-pouch) will make you go to the restroom more often. But you will have more control, and hopefully you will regain close to 100% control like before. You will have to eat more fiber to thicken up your output, or take something like imodium which helps greatly. After surgery your output will be a bit loose, but that will get much better fairly quick. Going so often isn't as bad as it sounds since it doesn't take much time or effort to get rid of your stool. Frequency also depends a couple internal factors: how much rectum you have left and how strong the muscles are. I had my rectum removed as well, but the doctor left a stump in order to connect the j-pouch. The j-pouch helped certainly helped with control but I also had to do some exercises to make the muscles stronger. I have heard that now instead of completely removing the rectum, they strip the inner linnings and then connect the ileum. In this case since the rectum is left in place, you will have more control. I'm not sure if a j-pouch is even needed in this case but your doctor will know- this procedure was created well after I had my colon and rectum were removed so I'm not very familiar with it.

Is your doctor considering just to remove only the affected parts of the colon? If so you won't have a j-pouch. I have heard of people having just part of the colon removed, but these people just end up getting a relapse and need more surgery down the road- at least it sure seems that way from my experience. A total colectomy will certainly prevent you from getting colon cancer and whether it's a j-pouch or some other surgery, your life will get back to normal. J-pouches are not without their problems, but the problems don't cause cancer. If the j-pouch fails a permanent ileostomy can alwasy be made. That's another topic you're no where needing to discuss yet, but it's another way to get on with life. I've had mine for over 20 years and it hasn't hampered my life at all. I probably empty my ostomy bag about 8 times a day but each time takes only a few minutes. Sometimes I have to empty it in the middle of the night- but If I stop eating early enough then I empty it just before bed and again when I wake up. No big deal.

Lastly, I noticed Christine mentioned her surgery took 6 hours. Mine took around 4. It was a two step procedure- the colon and rectum was removed, j-pouch made, and temporary ielostomy created to allow the j-pouch to heal. About four months later I had the takedown procedure, or reversal as others call it and that didn't take long. Eating normal came back fairly quick. I was very thin after my first surgery so I may have waited a little longer for the takedown procedure, but I would think having two surgeriers is the norm. As for diet, I don't recall anything I had to stay away from foodwise, but the extra fiber and/or imodium sure helped.
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Ulcerative Colitis 1986
Complete Proctocolectomy with j-pouch 1987
Permanent Ileostomy 1991
Crohn's Disease (just inside stoma) 2012
No meds post 1987 surgery to 2012

Current Meds:
Pentasa 3000mg daily
Imuran (Azathioprine) 100mg daily
Folic Acid supplement: 1mg daily
Mulit Vitamin/Fish Oil or Flaxseed Oil daily
Tumeric and Boswelia occasionally.
11-06-2012, 05:03 PM   #11
Phinkle
 
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[QUOTE=Hobbes650;526637]Hi Phinkle,

Having an internal pouch (like a j-pouch) will make you go to the restroom more often. But you will have more control, and hopefully you will regain close to 100% control like before. You will have to eat more fiber to thicken up your output, or take something like imodium which helps greatly.

If I remember, Imodium does not work with UC, but with the colon out and UC gone, Imodium does work?

After surgery your output will be a bit loose, but that will get much better fairly quick. Going so often isn't as bad as it sounds since it doesn't take much time or effort to get rid of your stool. Frequency also depends a couple internal factors: how much rectum you have left and how strong the muscles are. I had my rectum removed as well, but the doctor left a stump in order to connect the j-pouch.

Did you know going in to surgery that your rectum would be removed or with this a decision the Dr. made during surgery? Mine is staying from what the Dr.'s are saying.

Is your doctor considering just to remove only the affected parts of the colon?

It was presented to me as an option, but also followed up with "it will only be a matter of time before the whole colon needs to be removed". I am leaning towards removal of the whole colon and being done with it. I have 3 kids under 6 and dont want to be down and out 2 x's because of UC, it has controlled my life enough in the past, now its my turn.

If so you won't have a j-pouch. I have heard of people having just part of the colon removed, but these people just end up getting a relapse and need more surgery down the road- at least it sure seems that way from my experience. A total colectomy will certainly prevent you from getting colon cancer and whether it's a j-pouch or some other surgery, your life will get back to normal. J-pouches are not without their problems, but the problems don't cause cancer. If the j-pouch fails a permanent ileostomy can alwasy be made. That's another topic you're no where needing to discuss yet, but it's another way to get on with life. I've had mine for over 20 years and it hasn't hampered my life at all. I probably empty my ostomy bag about 8 times a day but each time takes only a few minutes. Sometimes I have to empty it in the middle of the night- but If I stop eating early enough then I empty it just before bed and again when I wake up. No big deal.

This whole paragraph made me feel more comfortable with the entire procedure.


Thanks again for the input... It is much appreciated.
11-06-2012, 05:48 PM   #12
Hobbes650
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[QUOTE=Phinkle;527281]
Hi Phinkle,

Having an internal pouch (like a j-pouch) will make you go to the restroom more often. But you will have more control, and hopefully you will regain close to 100% control like before. You will have to eat more fiber to thicken up your output, or take something like imodium which helps greatly.

If I remember, Imodium does not work with UC, but with the colon out and UC gone, Imodium does work?


A1) My thinking as to why it doesn work with UC is that your colon isn't absorbing excess water like normal, thus keeping stool liquidy. But once removed it works better. Nothing seemed to work with me when my colon was sick. Even food I ate, seemed to just go right through me. There are alternative to Immodium as well. Immodium was prescription only back in my day, so I used Metamucil, or Fibrecon (much better than Metamucil). Immodium slows down activity, but the other stuff adds fiber. Best to try both methods and see what you like best

After surgery your output will be a bit loose, but that will get much better fairly quick. Going so often isn't as bad as it sounds since it doesn't take much time or effort to get rid of your stool. Frequency also depends a couple internal factors: how much rectum you have left and how strong the muscles are. I had my rectum removed as well, but the doctor left a stump in order to connect the j-pouch.

Did you know going in to surgery that your rectum would be removed or with this a decision the Dr. made during surgery? Mine is staying from what the Dr.'s are saying.

B1) Yes, my illness started inside my rectum and moved throught my entire colon in just a few months. Never healed well enough for me to have a normal life, and then relapsed.
Is your doctor considering just to remove only the affected parts of the colon?

It was presented to me as an option, but also followed up with "it will only be a matter of time before the whole colon needs to be removed". I am leaning towards removal of the whole colon and being done with it. I have 3 kids under 6 and dont want to be down and out 2 x's because of UC, it has controlled my life enough in the past, now its my turn.

If so you won't have a j-pouch. I have heard of people having just part of the colon removed, but these people just end up getting a relapse and need more surgery down the road- at least it sure seems that way from my experience. A total colectomy will certainly prevent you from getting colon cancer and whether it's a j-pouch or some other surgery, your life will get back to normal. J-pouches are not without their problems, but the problems don't cause cancer. If the j-pouch fails a permanent ileostomy can alwasy be made. That's another topic you're no where needing to discuss yet, but it's another way to get on with life. I've had mine for over 20 years and it hasn't hampered my life at all. I probably empty my ostomy bag about 8 times a day but each time takes only a few minutes. Sometimes I have to empty it in the middle of the night- but If I stop eating early enough then I empty it just before bed and again when I wake up. No big deal.

This whole paragraph made me feel more comfortable with the entire procedure.


Thanks again for the input... It is much appreciated.
Made some comments above in green. Keep us posted!
11-07-2012, 11:28 AM   #13
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There is another support board that is focused only on J-pouch type issues called The J-Pouch group. Here is the link for that: http://j-pouch.org/eve
I don't visit that forum very often, but it might also be of some help to you.[/QUOTE]

Thanks for that info,I didnt even know what a j-pouch was. Ive got a lot to learn.
11-15-2012, 06:25 PM   #14
Hobbes650
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While rereading this thread it occurred to me how incredibly difficult it must be to be in this situation- somewhere in the middle. Many of us had no choice but to have surgery so there wasn't any real decision. When I was 19 I wanted to avoid surgery, but now at 44 I want to keep my life as normal as possible and that's actually a different goal since surgery may be the best way to do that. But one thing is certain- having surgery while you are in decent shape going in will make the recovery better than if you had it when very sick. I don't have nearly as much patience now when it comes to my health, and I think that's a good thing. I'm hope things work out soon for you!
11-16-2012, 10:10 AM   #15
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Ive had this UC for 10 years now and Remicade has worked for me when I last used it 2 years ago.
Now Im trying to get back on ramacade and the main problem Im having is just getting it. At this point my doc has signed the papers for Johnson & Johnson to allow me to get it,that was mailed to them 1 week ago,so now I sit and wait.
Surgery is an option for me and my general health is good BUT I am 75 years old so Im holding off the surgery unless its life threatening.
11-16-2012, 01:40 PM   #16
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I have heard really great things about the Cleveland Clinic, and all of the research seems to be stemming from there.

My pouch is apparently working normally, but they have found that I have sphincter/pelvic floor issues. I will be having another surgery to have a sacral nerve stimulator implanted. At least it is outpatient! I am so ready to be done :-)
11-19-2012, 10:21 AM   #17
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I have heard really great things about the Cleveland Clinic, and all of the research seems to be stemming from there.

My pouch is apparently working normally, but they have found that I have sphincter/pelvic floor issues. I will be having another surgery to have a sacral nerve stimulator implanted. At least it is outpatient! I am so ready to be done :-)
Im thinking of going to the Mayo Clinic here in Jacksonville, Florida to try to get some REAL answers.
12-04-2012, 10:05 AM   #18
QueenGothel
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Lots of good information. My daughter had UC and now has a J-Pouch. She had a mucousectomy which I believe is very important factor when choosing a doctor. Yes she goes about 4-5 times a day but it is not like UC. Basically when she pees she poops and it doesn't take long at all. No long bathroom trips like before. She sleeps through the night and is in a way better state than with her colon and even better since takedown. We had a lot of hurdles though and recovery was rough after takedown. It took about 2 months to get things under control and figure out how much fiber and Lopermide she needs.

Please keep us posted.
12-10-2012, 01:54 PM   #19
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My life has improved greatly from having ulcerative colitis to having a j-pouch. I do take immodium regulary (8 a day), and go to the bathroom anywhere from 5 to 8 times a day, but its quick and nothing like UC. It's controllable and I have not messed up any pants since then. It has been a year and a half since my take down , and I still wake a couple of time during the night to use the restroom, but over time, the dr says it will decrease. I will suggest one life savor that I have yet to see is ILEX. Aftertake down, my bottom would burn so badly after using the restroom, I tried everything I could to ease the pain and Ilex was my one saving grace. Good luck and feel free to ask any questions - it is hard to find info on the subject and I appreciate every bit advice I was able to get.
12-12-2012, 04:35 AM   #20
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Hi everyone and hope you don't mind me posting on hear as i am a newbie to the forum which I just descovered today as I was only told about it yesterday from my new consultant. I came dowm with ulcerative colitis 8 years ago, didn't have any warning signs just became really ill with diahorea and couldn't eat or if I did couldn't keep anything down. After 3 weeks trying to save the large bowel I ended up having to have it all removed and a colostomy bag! I was absolutly gutted in more ways than one. After a few really bad days trying to get my head round it I decided that the disease had spoilt my life enought and wasn't going to get the better of me and started putting my life back together. Two years later I went in for the pouch reconstruction surgery which is now 6 years down the line. I take loperimide on a daily basis which helps to keep the diahorria under control ( well some of the time) while life is not without it's challengers I manage to work part time and have a reasonable quality of life. Loo visits are between 6 to 8 times a day and have to go throught the night as well but I take each day as it comes and tryn to make the best of what it throws at me. Best wishes to you all xxx
01-02-2013, 12:19 AM   #21
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I had my surgery in 1994 and have an S pouch. Like others in this thread I had no choice at the time. My entire colon was involved and even IV steroids were no longer working. they said I could have surgery now or some back in a week when it turns into an emergency.

So 18 years with a pouch and while it certainly isn't perfect it beats the alternative I faced at the time.

Problems:
I still go roughly 10 times a day, including 1 or 2 at night. But I will also tell you to pay close attention to your body and movement patterns. If I start drinking milk tonight I can guarantee 4-6 trips to bathroom at night instead of 1-2. I haven't figured everything out (yes even 18 years and I'm still working on it) but I defiantly know a few things to avoid.

I suffered bowel obstructions due to scan tissue for several years and had another surgery in 2009 (very successful) to remove the adhesions. they are likely to return one day but in the meantime life is good.

The flu almost always results in serious dehydration, for me at least, without a colon. I have had several trips to the emergency clinic to get treated for dehydration after a flu.

Imodium definitely works with a pouch and honestly I would use it more often if I remembered to.

I do have nutrient absorption issues and take some vitamins to supplement my diet. I recommend checking into this.

With UC I couldn't live my life the way I did before but with a pouch I can and I DO. I spend a lot of time camping, wilderness camping, canoeing, kayaking and what ever else I can think of. Camping is the one time when I really pay attention to what I'm eating and yes I use Imodium.

I hope this helps in some way.
01-02-2013, 01:03 AM   #22
Hobbes650
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I had my surgery in 1994 and have an S pouch. Like others in this thread I had no choice at the time. My entire colon was involved and even IV steroids were no longer working. they said I could have surgery now or some back in a week when it turns into an emergency.

So 18 years with a pouch and while it certainly isn't perfect it beats the alternative I faced at the time.

Problems:
I still go roughly 10 times a day, including 1 or 2 at night. But I will also tell you to pay close attention to your body and movement patterns. If I start drinking milk tonight I can guarantee 4-6 trips to bathroom at night instead of 1-2. I haven't figured everything out (yes even 18 years and I'm still working on it) but I defiantly know a few things to avoid.

I suffered bowel obstructions due to scan tissue for several years and had another surgery in 2009 (very successful) to remove the adhesions. they are likely to return one day but in the meantime life is good.

The flu almost always results in serious dehydration, for me at least, without a colon. I have had several trips to the emergency clinic to get treated for dehydration after a flu.

Imodium definitely works with a pouch and honestly I would use it more often if I remembered to.

I do have nutrient absorption issues and take some vitamins to supplement my diet. I recommend checking into this.

With UC I couldn't live my life the way I did before but with a pouch I can and I DO. I spend a lot of time camping, wilderness camping, canoeing, kayaking and what ever else I can think of. Camping is the one time when I really pay attention to what I'm eating and yes I use Imodium.

I hope this helps in some way.
Hi canuckscouter, yes it does and thank you for your post. Glad to see someone who has an s pouch since mostly I see j-pouchers.

Being without a colon as well, I do get dehydrated. One thing I've done is add more salt and potassium to my diet. One good way I do this is to add Morton's Lite Salt to my juice, ice tea, lemonade, etc. I'll even make my own sports drink- there are recipes on line for homemade gatorade or homemade sports drink, and they are all easy to make. We don't absorb salt or potassium as well without a colon and I find I do feel better adding it back in. But your're 100% right in bringing up the flu. I have not had that in a while but can easily see how the flu can easily make us more dehydrated- thanks for pointing this out!
01-07-2013, 11:51 PM   #23
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Thanks for the feedback.

I haven't heard of Morton's Salt before but will certainly look into that. I have tried homemade sports drinks in the past but only a long time ago and wasn't very successful. I find Gatorade too sweet and causes more diarrhea because of it. I also find I have issues absorbing other things like iron. My iron levels have dropped a lot over the last 10 years but not below what my GP considers a problem. I started taking iron supplements on advice from a homeopathy practitioner and some problems went away.

And now the last few days I have had some significant pouchitis symptoms. I see my surgeon Fri. Even so it is better than UC or what other people I know are going through.

Got to run.
01-08-2013, 08:33 AM   #24
QueenGothel
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They also make electrolyte water. That is what we use my DD hates flavored anything. Whole foods makes one their brand 365. Essentia waters makes one too. Tastes like water nothing else.
01-08-2013, 10:32 AM   #25
ChristineinDenver
 
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I use the electrolyte water and its great!! I cant do the sweet sports drinks either, and this adds back in what I need. Hang in there Canuckscouter!! Rooting for you.

I also have used L-Glutamine three times a day in a small amount of water. NYU did a study on it for Crohns and Colitis people, and it helps heal the intestinal mucosal lining when you have D issues. It also is good because it isn't toxic (check out the report http://www.med.nyu.edu/content?ChunkIID=21611). While is doesn't work for everyone, it might be worth a try.
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